Announcement of UCP Development Position Opening

United Cerebral Palsy of Middle Tennessee is seeking a full-time employee or contractor to help our agency meet our commitment to individuals with disabilities that we serve through a variety of aggressive fund-raising endeavors, two of which involve sports-related special events. While we are obviously looking for applicants who have the confidence and ability to raise funds and to develop sponsorships & special events, the successful candidate we are seeking is not necessarily the traditional non-profit development person. We are seeking applicants who have a combination of unique skills, reliable community based contacts and basic know-how. This is not a learn-as-you-go position. The individual selected for this position will have to hit the ground at top speed and deliver. At the same time, we are looking for someone who fits in well with our team of staff and dedicated board members. Go to the following link for information and specific instructions about how to apply:

http://www.ucpnashville.org/Development/PositionAnnouncement.htm

Gap in State Infrastructure Impacts Developmentally Disabled

Developmental Disability is generally defined under state and federal law as “severe, chronic disability; manifested before age 22; attributable to a mental or physical impairment; resulting in substantial functional limitations; likely to continue indefinitely; and requiring specialized supports and services.” Developmental conditions that we typically recognize include conditions such as autism, cerebral palsy, intellectual disability, muscular dystrophy, cystic fibrosis, and spina bifida. DD may also include early onset disabilities such as spinal cord or brain injury acquired in the developmental stages of life. As diagnostics become more complex, we are seeing a number of less recognized, but equally severe conditions. While the state of Tennessee provides dedicated developmental services to persons with mental retardation (intellectual disabilities), there are no dedicated services for persons with other equally severe forms of developmental disability.

The Tennessee Department of Mental Health and Developmental Disabilities has no services and no funding for people with any form of Developmental Disabilities. Despite a legislative mandate in 2000 that changed the name from the “Department of Mental Health and Mental Retardation” to the “Department Mental Health and Developmental Disabilities” and made persons with Developmental Disabilities eligible for services beginning in March 2002, the legislative intent was never carried out.

In order to address the state’s failure to meet the mandates of a series of federal court orders related to the depopulation of the state developmental centers, the Division of Mental Retardation was moved out of the Title33-mandated department to the Department of Finance and Administration under Executive Order of then-Governor Sundquist.

The courts essentially defined a “protected” DD population in the state of Tennessee. Even though there were people with all kinds of developmental disabilities (as defined above) living in the state’s large developmental institutions, the courts defined the entire group as being “mentally retarded.” In doing so, the courts hearkened back to a time in our country when people believed (and our laws thus reflected) that all people with developmental disabilities had “mental defects.” Obviously, we now know that there are many forms of developmental disability; some forms indeed impact intellectual capabilities. Other forms impact physical and even behavioral functions. The truth is that most developmental disabilities include multiple areas of affect.

All Developmental Disabilities funding went with the Division, and when that happened, children and adults with some of the most severe forms of developmental disability in our state were simply dropped out of the equation. Over the years, commissioners under various administrations have attempted to address this gap, but with no funding stream and no definitive “home” in state government for these families, their efforts have been fruitless.

Year after year, these families are told to wait until the state gets the problems with the Division of Mental Retardation Services solved; then their issues will be addressed. The only thing is, we never seem to get the problems with DMRS solved. This year, there has been much attention focused on the Division of Mental Retardation budget cuts, the Division’s long waiting list (6,000+), and the new Initiative on Aging. Yet few Tennesseans realize there is a group of severely disabled people, many of them children, who were aren’t even on the radar screen in our state. In effect, these families are told they are second class citizens with second class disabilities, not even worthy of a home in state government.

Elaine Ganick’s Fabulous Birthday Party

Elaine Ganick is a member of the board of directors of UCP. She chairs our Public Relations committee. Elaine wanted to do something special to commemorate her 60th birthday, so she is hosting her own birthday party and inviting everyone to her incredible ONE WOMAN SHOW!

“Sex in the Sixties . . . There Ain’t None!” takes you through the decades with Elaine’s unique sense of humor as she shares memories and lessons learned.

Wednesday, June 10, 2009
7:00 p.m.
HCA Auditorium
One Park Plaza
Nashville TN 37203
Phone: 615-377-7877

In lieu of gifts, Elaine asks that you make a tax deductible donation to United Cerebral Palsy.

Casual Day 2009

Become a Casual Day Coordinator at your business or within another group and get your Casual Day t-shirt, art print, and goody bag FREE!

2009 Casual Day is in full swing. (Thanks to Pete Weber: Listen to our great PSA!) Over 300 area businesses and organizations participate in this annual event. Casual Day (or Casual Friday) has become such an accepted part of the business landscape that few people remember where it came from. Believe it or not, United Cerebral Palsy developed the original Casual Day in the early 90’s! In Middle Tennessee, we have celebrated UCP Casual Day since 1992. At the seventeen year mark, Casual Day has netted over half a million dollars to UCP throughout the years. 100% of these dollars have been used to provide direct services to persons with all types of disabilities in our community.

Each year, coordinators and participants at area businesses await the specially designed “Tennessee Heritage” theme, which is displayed on the t-shirts and art prints. The 2009 theme is “Tennessee Wildlife” and it features the artwork of UCP Development Director Diane Dietrich.

Click Here to become involved or place your order.

Our thanks to this year’s Casual Day Sponsors:
AT&T
Circle K
Colliers Turley Martin Tucker
Banana Boat
Macy’s
Titan’s Radio
Midtown Printing
Road Runner Courier
ImpactHealth Executives
Southeast Financial
104.5 The Zone
Pete Weber & Terry Crisp
The Nashville Zoo
Jack Hamer
Amsurg
RJ Young
Boyle
Medtronic
Chick-fil-A
Kroger
Nashville Parent
103 WKDF
Tennessee State Parks

Metro All Together Kids Grant

UCP is concluding the first year of our All Together Kids Grant through Metro/Davidson County. All Together Kids is UCP’s Inclusion Program, aimed at offering the same opportunities to children with disabilities that are available to typically developing children. Despite advances to our educational systems as a result of the Americans with Disabilities Act and the Individuals with Disabilities Education Act, children with disabilities have significantly less access to community based activities than their typically developing peers. 81% of respondents in the 2009 grant pre-assessment indicate that their child has “limited or no access to opportunities for participation in integrated programs and activities in their local neighborhood or community.” 71% of respondents reported that their child has “limited or extreme difficulty interacting with typically developing peers.”

Children with disabilities are limited in exposure to activities that allow them to compete on an equal playing field, and as they grow, they have proportionately less opportunities available to them in higher education and in the workplace. All Together Kids addresses this gap by affording access to existing community and neighborhood-based arts programs, sports, recreation, day care, summer programs, camps, and the myriad of peer-related activities that round out the social, physical and intellectual development of all children.

The purpose of the Metro grant is to provide funding supports to families of children with severe disabilities in order that they may access these programs with a service plan that is specific to the individualized needs of each child, and targeted to advance personalized educational and developmental progress goals in the most integrated and inclusive environment possible. UCP also has a training curriculum for community agencies to assist with nclusion objectives and we provide technical assistance and consultation to community-based children’s programs throughout the Metro area aimed toward development of infrastructure capacity to include children with disabilities.

The 2008-09 grant continues through June 30, 2009. According to UCP program director Laura Crain, most of the requests for this year have been for assistance in enrolling children with disabilities in summer programs. At present, all of the 72 contracted slots have been filled, and 100% of the funds have been allocated. There is currently a waiting list of 32 children for the program. UCP has applied for continued funding supports for the program in 2009-10.

Remembering Joy Hollins . . .

The following article was written by UCP Executive Director Deana Claiborne the day that Joy Hollins passed away. Less than two weeks later, Joy’s father Sam Hollins also passed away. Our hearts go out to the Hollins family in their time of grief.

Joy Hollins was born with severe cerebral palsy that affected virtually every system in her entire body. She needed personal supports for all activities of daily living, and she was not able to speak. Despite these immense disabilities, with the support of her family and friends, Joy was able to achieve an education and she became an integral part of her community. She learned to communicate with others through Morse code by blinking her eyes.

Joy was an active member of the Woodmont Baptist Church. She loved UCP Sports Night, and she never missed UCP picnics and many agency-wide get-togethers. She particularly enjoyed our Halloween parties where her costumes were always characteristic of her innovation and wonderful sense of humor. She and UCP immediate past president Martin McGrath were great friends. Joy and Martin advocated together on many disability issues.

Joy was an avid reader and life-long learner. The advent of computers opened new vistas in her life. Through the use of technology, Joy was able to use one foot to maneuver a tracking device. This allowed her to access a keyboard. Before long, Joy was sending emails and communicating electronically with her many friends.

When Joy was a child, her parents were told to place her in a state institution. This was at a time when many children with severe developmental disabilities were routinely institutionalized. The Hollins chose to keep Joy at home, where she thrived.

Later, when Tennessee depopulated the large state institutions and opened home and community based Medicaid waivers for persons with mental retardation, Joy did not qualify for the waiver programs. Because of her many achievements, it was evident that Joy did not have a cognitive disability. Therefore the funding and supports that were available to people with other types of developmental disabilities in Tennessee were not available to Joy. Joy always believed that supports and services should be supplied in a more equitable way, and she advocated for independent living opportunities for all people with disabilities. Despite being left out of these supports, Joy never expressed any ill will toward those who received them. Instead, she was happy when any person with a disability received a needed support.

Many of Joy’s successes in life can be credited to her persistence and determination. Without the support of her family, and in particular, the untiring care given by her loving mother, Joyce Hollins, many opportunities would have been lost. Joy was always the first to give credit to her mother for all that her mother did to impart quality to her life.

Later in life, when greater medical needs began to emerge, Joy was able to receive some home based medical supports through TennCare. She was worried that the cost of her care would result in her having to be placed in a nursing home. Instead, she died last night, quietly in her sleep, in her own home.

Budget shortfall may force deep cuts in Tenn.

Disability, children’s services brace for funding drop

By Chas Sisk
THE TENNESSEAN
May 26, 2009

Raising a child with autism is difficult.

Diane Lara is raising two.

Heavy lifting, trips to the doctor and sleeplessness — insomnia is frequent in children like hers — are a few of the challenges Lara deals with daily.

She relies on the help of caretaking assistants the state provides. But with government leaders in Nashville looking at further cuts, Lara might be dealing with more of those challenges alone.

“I’m scared,” the Shelbyville mother said last week. “I hate to say it because I’m luckier than some people, but I can’t imagine how much more tired I would be having to deal with the two of them all by myself.”

As the recession continues to drag on, Tennessee’s mental disability services and many other departments are bracing for another hit.

Two months after declaring that the federal stimulus plan had saved the state from taking drastic measures to balance the budget, state officials now say hiring freezes, layoffs and deep cuts may be needed after all to deal with a sharp decline in tax receipts.

The shortfall will force the state to draw deep from the financial reserves that it built up earlier in this decade, officials say. But it also will mean speeding up cuts — possibly even to programs such as mental health, mental disability and children’s services — that officials had hoped to phase in gradually over the next few years.

“We had to propose reductions, a lot of reductions, in order to make this budget work,” said David Goetz, the state’s finance commissioner. “Under any circumstance, it’s a very, very difficult budget.”

Services may be slashed

The cuts could mean sharp reductions to services like the state-paid personal assistants who help Lara take care of her 17-year-old daughter, Megan, and her 10-year-old son, Nickolas.

Both Megan and Nickolas have autism that results in severe learning disabilities. Megan also has a seizure disorder, and Nickolas has cerebral palsy. Lara works part-time as a bus aide, and her husband, from whom she is separated, provides financial support.

But it is nowhere near enough to pay for the personal assistants, who are paid about $200 a day each. With each child requiring nearly round-the-clock supervision, Lara says she could not take care of them both without the assistants.

“My idea of fun is getting to go out to the grocery store,” she said.

Taxes come up short

Programs like the personal assistant service face the budget knife because tax receipts have fallen far short of projections.

In March, the Bredesen administration estimated the state would receive $11.3 billion over the next budget year, which begins July 1. Now, the administration says Tennessee will receive $173 million to $350.7 million less than that.

That is in addition to a $116 million to $172 million shortfall in the current budget year, which ends June 30.

Many state departments will be asked to bite down harder to bridge that budget gap.

Few departments, however, have already been cut as deeply as the Division of Mental Retardation Services. A preliminary budget released by the state in March called for cutting the state’s allocation to the division by 12 percent to $63.7 million in the budget year that begins July 1.

Even deeper cuts could follow. A document released along with the preliminary budget shows that the state would have slashed the division’s budget in half, were it not for the infusion of cash from the federal stimulus plan.

Now with the deficit deepening, many expect state budgeters to go back to that plan and call for another round of reductions.

Gov. Phil Bredesen did not rule out such an action late last week.

“I’ve tried to be really open,” he said Thursday. “I’m very concerned about the cuts, particularly in children’s services and mental health. I think, mental retardation, we probably have some room there because our rates are so high here in Tennessee.”

That assessment is disputed by advocates. They say cuts are already likely to harm the state’s mentally disabled population.

“We’re seeing reductions to programs that help people to function very well,” said Donna DeStefano, assistant director of the Tennessee Disability Coalition, an advocacy organization. “You start taking them away, and people end up getting hurt.

“Then you have a higher need. In the short-term, it can be very cost effective, but in the long-term it’s not.”

Already feeling the pain

Several lawmakers said they hope to find some ways to keep mental disabilities and other social services from taking a harder hit.

“There comes a point in time where you cut a service so much, you have to ask yourself why you’re providing that service,” said Sen. Jim Kyle, the Senate Democratic leader.

But the alternatives are few. Tax increases have been ruled out, several legislators and other government officials said. Staffing reductions also are possible, though Bredesen pledged in March to avoid layoffs until at least next year.

“We run a pretty lean government anyway in Tennessee,” said Rep. Mike Turner, a Democrat representing Old Hickory. “There’s not a whole lot of room to cut. You’re getting into hurting people pretty quick when you start to cut.”

Diane Lara says she is already feeling the pain. Until recently, Megan’s and Nickolas’ personal assistants both came seven days a week. Now, Megan’s come six days, and Nickolas’ come five.

Meanwhile, Lara’s challenges mount. Next month, Nickolas will undergo surgery in an attempt to strengthen his legs enough to allow him to walk. The operation is meant to make him more independent, but more immediately, it will mean three months in casts.

It’s a trial that will require Lara to rely even more on the personal assistant program, she said.

“I can’t be two places at once,” Lara said. “What happens if I’m doing something with him, and she has a seizure and stops breathing?

“He will be totally dependent on me.… I’m hoping they give me the help that I need.”

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Schools, Metro to help kids with disabilities transition to real world

Published on Nashville City Paper: Nashville’s Online Source for Daily News (http://nashvillecitypaper.com)
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Amy Griffith Graydon
School districts are required by federal law to help kids with disabilities transition from high school to the outside world. But getting that done effectively takes support from across the community, according to Karen Curry, a Stratford Comprehensive High School consulting special education teacher.

Curry said Monday that she sees that kind of support starting to grow in Nashville.

“It takes everybody. I think that, finally, we have everybody on board,” Curry said.

Metro Nashville Public Schools already has programs in place to help kids with disabilities move to work or school after high school graduation. But last year, members of Mayor Karl Dean’s Advisory Council on Special Education identified this as an area in need of improvement.

In response to the recommendations, a pilot program was developed to start at Stratford next year that will help high school kids make plans for the future. Stratford currently has almost 180 students with disabilities, about 100 of whom are expected to go on to additional schooling after they graduate. The pilot program at Stratford will be geared to help special education students with no plans for after high school.

The Stratford program was one of the areas of focus at Monday’s education summit, an annual initiative of the Mayor’s Office. Last year’s summit tackled truancy, and recommendations from participants led directly to the recent establishment of the new Metro Student Attendance Center. The summit this year focused entirely on transition services for students with disabilities.

Dean told summit participants that the Mayor’s Office can help the Stratford pilot program by facilitating connections between the students and the community, most immediately through the Mayor’s Office and Metro government.

“A pilot program like this, if it’s successful, can be used at all our high schools,” Dean said. “That should be something we’re able to do.”

After the summit, Dean said improvement of transition services can be part of the positive changes that are already taking place for Metro special education. He also pointed to the economic benefits of preparing students with disabilities to work and contribute to the community.

District-wide, 12 percent of Metro students receive special education services, according to Report Card information from the Tennessee Department of Education. Visit Nashville.gov/mocy/specialed for more information about recommendations from Dean’s Advisory Council on Special Education.

Letter from Asst. Commissioner Norris to DD Taskforce

In the report entitled “Fulfill the Promise” the Developmental DisabilitiesTask Force appointed by the state legislature called for an increase in state funding for the Family Support Program, one of Tennessee’s only service programs that is available to persons with developmental disabilities other than mental retardation. The entire Family Support Program is now at risk due to the current state budget situation. Go to the following link to download the letter that Assistant Commissioner Steve Norris sent to the members of the taskforce detailing state plans for the future of the Family Support program:
http://www.ucpnashville.org/FamilySupport/NorrisLetter.pdf

State Disabilities Fund May Dry Up

April 11, 2009
Program’s budget for 2010 could drop from $7 million to $200,000

By Colby Sledge
THE TENNESSEAN

Money is already tight for Murfreesboro residents Merideth and John Allen.

Their daughter Hannah, 17, is mentally retarded, and their son Josiah, 15, has spina bifida and requires a ventilator. John was laid off from his job at Bridgestone in December, and Merideth has been searching fruitlessly for work from home as she cares for Josiah.

To help offset some of the financial strain, the family has been using funds from a state program designed to help residents cope with disabilities ranging from wheat allergies to muscular dystrophy.

But now that program, known as Family Support, could face steep cuts after federal stimulus funds run out.

The program will receive slightly more than $7 million over the next year, mostly because of federal stimulus funding. But then the budget could plunge to $200,000 by mid-2010 if state revenues don’t improve.

“There’s no way we can make up that difference,” said Mary Hildebrand of The Arc of Davidson County, which administers the program in Nashville. “This is something that’s going to have a huge impact on people with disabilities.”

In Davidson County, 400 families receive about $1,500 each annually from the program. An additional 1,500 are on the program’s waiting list, and that’s just “the tip of the iceberg of the people eligible,” Hildebrand said.

About 4,000 families across the state receive money to help purchase medical equipment and pay for therapies to treat developmental disabilities. Families typically get $1,000 to $1,500 annually.

Other programs at risk

Corporations and nonprofit organizations could help make up some of the expected funding loss, but they won’t come close to restoring the proposed cuts, said Deana Claiborne, executive director for United Cerebral Palsy of Middle Tennessee, which oversees the funds for Rutherford County.

“You might be able to get a one-time grant of 10 (thousand) or 15 thousand dollars, but when you’re talking about needs that don’t change year to year, there needs to be an ongoing stable source of funds,” Claiborne said.

Stephen Norris, deputy commissioner for the Division of Mental Retardation Services, which oversees the program, said programs that don’t receive federal matching funds like Family Support were at greater risk of being cut.

“The problem is it’s 100 percent state-funded,” Norris said. “The picture is grim, to say the least.”

Norris said his office has cut administrative positions and direct care staff because of impending state cuts. Should state revenues increase next year, Norris said, the Family Support program would be one of the first places he would put the money.

Already cutting back

The Allen family has been using the money from Family Support to help pay for increased electric bills due to Josiah’s equipment. Merideth was hoping to use some of next year’s money on state and court fees to maintain conservatorship — a type of power of attorney — for Hannah.

“Our plans would be to just cut back on what we can, but we’re kind of already doing that,” Merideth said.

Gwen Dyer of Murfreesboro would take a double hit if the program was cut. Dyer, who has spinal muscular atrophy, a form of muscular dystrophy, uses the money for a behavioral therapist for her son Drew, 8, who has autism, and for instruments to help her grip items.

Dyer says she’ll have to find money elsewhere in her family’s budget next year if the program is cut.

“My husband and I are very budget-minded, so if there’s something my child needs, we would do anything we could to provide that,” Dyer said. “It’s going to hit a lot of people.”